Pull up a chair…this one may take some time. We safely transferred to Houston from Jackson yesterday after Maggie was discharged around 10:00 am yesterday. We flew commercial through Dallas and arrived in Houston after a grounding on the tarmac in Dallas due to weather in Houston. We slept like rocks in our newly renovated hotel room (the place we stay was damaged in last year’s flood and recently re-opened ground floor rooms) and made it to the clinical for lab work this morning. We then met with Dr. Raghav and Isabel, the clinical trial coordinator. We shared more about the post-treatment response from our perspective and they filled in with the clinical data. Basically, Maggie experienced a transient event in response to the priming dose. We had expected the possibility of anemia – let’s just say it was more pronounced than what she has ever experienced. Her body is still recovering and will get some help today at 6:00 pm with a transfusion – two units of blood should help restore her to better place – greater comfort and higher energy. The infusion of trial drug scheduled for today has been canceled. The plan is to give her the treatment next week at a level 50% less than the one typically planned for cycle 1 doses. (The trial protocol normally calls for this reduction for cycle 2 treatments and onward.) The sponsor company will have to approve this change, and we’re praying they will. I’m taking this opportunity to write during waiting room time.

Dr. Raghav also pulled some strings and got Maggie in this afternoon to see the pain management team. We’ve felt for some time we need a better strategy for staying on top of pain – finding the balance of pain prevention/treatment with alert functioning during the day and sound, predictable sleep patterns. We met with the “head honcho” – the director of the department. He delivered a plan after interviewing us, looking at Maggie’s health status, and looking at all current medications taken regularly and as needed. We’re hopeful his changes to her pain/nausea/anxiety drugs will deliver exactly what she needs to function optimally.

How is Maggie? I’m sure you want me to cover that a little better. She is exhausted but is really handling all the drama remarkably well. We talked on the way to the clinic this morning and agreed we would decline a treatment today if that was still planned. If that meant ending her participation in the trial, we’d do it and find plan B. She needs a week of rest to recover physically and emotionally from the “transient event” and the aftermath – being in the hospital and traveling while still sick. We are beyond thankful to find her MDA team in total agreement. Once again Isabel will be working for Maggie’s best interest in talking with the sponsor company. So, Maggie will get her transfusion tonight, rest in Houston tomorrow (all day in bed if she wants – no alarms, no floor stripping/wax in the wee hours like at Batston, no appointments, no planes to catch. Nothing but the rest she wants and needs), and return home Saturday to rest in her own bed.

I didn’t offer full updates during our time at Batson. Once again they proved why they are Maggie’s medical home base. Dr. Carroll (not her primary but the oncologist on 3C during her stay) and the 3C nurses and staff provided the perfect care she needed to deal with this event. We love them. Dr. Carroll coordinated with MDA and provided all information required for documenting not only her care but satisfying the data requirements of the clinical trial. A big thanks to him for a big job well done.

I’m running on adrenaline and hope to continue until I can collapse in my own bed Saturday night. Molly relieved me for the final night shift at Batson – while I slept soundly at the Cabot Lodge up the street, so I feel partially recharged. (Phil and Molly would do that much more often, by the way, if I would let them. They rarely can peel me away.)

One last thought: yesterday afternoon on the tarmac in Dallas, our American Airlines pilot gave us status updates with enough frequency that he started using his first name (“this is Bill from the cockpit”, not “this is your captain …”). How reassuring it is being on a first name basis with the one in charge, the one providing information, the one entrusted with your care. I know God doesn’t have a “first name”, but He becomes more encouraging the more I listen as He reassures. I don’t always take the time to tune in – to tune out the noise and listen. But when I do…..

My sheep hear my voice, and I know them, and they follow me. John 10:27

And when I follow….

He makes me lie down in green pastures. He leads me beside still waters. Psalm 23:2

One last request: prayer. 1) immediate relief through the blood (transfusion) tonight 2) ongoing relief from pain and discomfort 3) plenty of rest 4) safe travel home 5) (the big one) Easter Sunday at church for Maggie. She wants to be there if all possible!

Thank you for your commitment to praying for and encouraging us. We appreciate it. I’ll try to update again before Sunday but we do want to wish you a wonderful and blessed Easter weekend.